Caregiver Experiences During Their Child’s Acute Medical Hospitalization for a Mental Health Crisis

Abstract

Adolescents in the US are increasingly seeking treatment for mental health crises in emergency departments and general medical hospitals. Medical needs are often addressed quickly, yet youth remain hospitalized because further psychiatric treatment is not immediately available. We sought to better understand the experiences of caregivers whose children are “boarding” in a medical hospital while awaiting inpatient psychiatric treatment. We conducted semi-structured interviews with caregivers who were recruited, enrolled, and interviewed during their child’s hospital stay. Interviews were audio-recorded, transcribed verbatim, and thematic analysis was facilitated by NVivo12. Fourteen caregivers enrolled in the study. Themes that emerged included: positive hospital and provider experiences; frustration with the medical and mental health care systems; information needs; fears about inpatient psychiatric units; practical challenges and emotional needs; difficulties with caregiver-child communication; difficulties with clinician-caregiver communication; and need for self-care and support. While many caregivers felt positively about the overall experience at the hospital, they also wished for more information about their child’s treatment plan and future, as well as social support, emotional comfort for themselves, and self-care skills and resources. Their experiences illuminate ways in which clinical practice can ameliorate concerns and alleviate stress of caregivers related to their child’s mental health crisis.

Introduction

Mental health has become a global priority in recent years, as evidenced by the World Health Organization’s release of its Mental Health Action Plan in 2013 (World Health Organization, 2013). Both awareness of pediatric mental health and help-seeking behaviors have increased in the United States, and young people facing mental health crises are increasingly presenting to emergency departments (EDs) at medical hospitals (Bardach et al., 2014; Merikangas et al., 2015; Plemmons et al., 2018; Ruch et al., 2019). In cases where psychiatric hospitalization is needed, a national shortage of pediatric psychiatric hospital beds has led to long wait times in EDs and medical hospitals, even for youth who are otherwise medically cleared (Blader, 2011). This has resulted in a phenomenon known as “boarding” (Fieldston et al., 2014).

Long waits for inpatient psychiatric treatment are increasingly common in the United States, and there are currently no guidelines regarding best practices during this vulnerable period. Furthermore, in many cases, ED and general medical hospital staff may not be well-trained in the care of youth experiencing acute psychiatric distress, and specialty mental health services may not be available within the medical hospital (Claudius et al., 2014; Fieldston et al., 2014). As part of efforts to provide quality care during boarding, there is a need for more information about patient and family experiences, including which elements of care are perceived as helpful or not helpful. A recent qualitative study of young people who were boarding after ED presentation for suicidal ideation or attempt provided initial insight into these issues; youth highlighted the value of general aspects of patient-centered care such as provider compassion, but they also had unanswered questions about what to expect from the upcoming psychiatric hospitalization (Worsley et al., 2019).

Investigating caregivers’ experiences is a critical next step in efforts to provide family-centered care during the wait between ED presentation for a mental health crisis and the next phase of psychiatric care (American Academy of Pediatrics, 2006; Uhl et al., 2013). This is especially important given the role that caregivers play in supporting young patients. Further, prior studies of families experiencing a medical crisis have found a disconnect between what clinicians perceive as helpful in reducing parents’ stress and what caregivers actually experience as helpful (Aldridge, 2005), underscoring the need to hear from caregivers directly.

Aim

To examine the experiences of caregivers during their child’s ED presentation and subsequent hospitalization and boarding at a pediatric medical institution. Our intention was to better understand the experiences, emotions, and needs of these caregivers, with the ultimate goal of informing process improvements in the care of young people who are awaiting inpatient psychiatric treatment.

Methods

Design and Setting

This qualitative study was conducted at a large, urban, freestanding children’s hospital in the mid-Atlantic region of the United States that serves as an urban community hospital and a national referral center for children with complex medical problems. The process of care for young people presenting to the ED with a mental health crisis has been described previously (Worsley et al., 2019) and consists of evaluation by an ED physician, social worker, and psychiatrist. Youth requiring medical treatment are admitted to an inpatient medical or surgical unit. Those who are medically stable are evaluated by a psychiatrist to determine whether they require inpatient psychiatric care. This assessment begins with both the patient and caregiver present and also includes an assessment with the patient alone and a separate collateral interview with the patient’s caregiver alone.

Because the hospital does not have its own inpatient psychiatric unit, further treatment typically involves transfer to one of five psychiatric hospitals in the region. If an inpatient psychiatric bed is not available, the young person is admitted to an inpatient medical unit while they wait, where they are assigned a 1:1 safety observer and cared for by a general pediatric team in collaboration with a mental health consult service. Nursing care is provided by pediatric medical nursing staff, and 1:1 safety observations are most often completed by psychiatric technicians (i.e., bachelor’s-prepared hospital employees with additional training in child development and behavior management).

In keeping with state law, parents or legal guardians (herein referred to as “caregivers”) must consent to mental health treatment for children aged 13 years and under; teenagers who are 14 years old or older consent for their own mental health care. Caregivers are permitted to remain at the patient’s bedside 24/7 during the hospitalization, but their role during the hospitalization varies. Some caregivers accompany their children to the hospital and participate in assessment and treatment planning, whereas others are not able to remain in the hospital during the child’s admission (e.g., due to work, childcare, or other responsibilities).

Population and Procedures

Caregivers were recruited for study participation during their child’s hospitalization. Inclusion criteria were: 1) the caregiver was the legal guardian of a child who had presented to the ED with a mental health crisis associated with suicidal ideation or attempt, aggression, autism spectrum disorder, bipolar disorder, or schizophrenia and related disorders; 2) the consent to psychiatric treatment was voluntary; 3) the child had been medically cleared; 4) the child had subsequently been hospitalized on a medical unit while awaiting transfer to an inpatient psychiatric unit; and 5) the medical team gave permission to approach the family. Exclusion criteria were: inability to complete the interview in English (due to limited study resources to accommodate other languages). In some cases, the caregiver’s child was interviewed as part of a different study investigating youth experiences while boarding (Worsley et al., 2019).

We recruited participants between May 2018 and May 2019. Our recruitment efforts included daytime, evening, and weekend hours to accommodate various family visiting schedules, and we obtained permission from the medical team prior to approaching caregivers. We recruited on a rolling basis until thematic saturation was reached.

Members of the research team explained the study to eligible caregivers and completed the informed consent process with those interested in participating. This took place in a private room within the hospital or, if a caregiver was not available in person, both the informed consent process and the interview were completed by telephone. The telephone option sought to remove barriers for caregivers with limited scheduling flexibility. Participants were compensated $25 for their time. The Children’s Hospital of Philadelphia institutional review board approved study procedures.

Data Collection

Interviews were conducted by three master’s-level research staff with qualitative research training and experience. None were part of the clinical teams who care for the eligible patient and caregiver populations. Questions followed a semi-structured interview guide, allowing flexibility for follow-up questions. (Sample questions from the Interview Guide may be found in the Supplemental Online material, eTable 1.) Interviews were audio-recorded and transcribed verbatim. Participants also provided demographic information about themselves and their hospitalized children via a self-report questionnaire.

Data Analysis

All research team members read all interview transcripts following completion of each interview, to familiarize themselves with interview content. Then, two members of the research team independently read interview transcripts to identify themes, using the principles of directed content analysis (Hsieh & Shannon, 2005). Initial coding and thematic analysis was guided by codes that had emerged in a prior study of adolescent patients awaiting inpatient psychiatric treatment (Worsley et al., 2019). New codes were developed to reflect comments by caregivers that were not encompassed within the codes from the prior study. Coders met regularly to discuss emerging themes, and discrepancies were resolved through discussion with the study team in order to reach consensus. The team determined thematic saturation had been reached after 6 successive interviews did not yield new themes and stopped enrolling additional caregivers at that point. NVivo 12 (QSR International, 2018) was used to organize the thematic analysis.

Results

Sample

We ultimately identified 20 eligible caregivers; 14 enrolled in the study and 6 declined to participate. Reasons for declining included feeling exhausted by the hospitalization, or that it was “not a good time.” Each of the 14 participating caregivers had one child who was boarding. Table 1 presents caregiver sociodemographic characteristics. Most caregivers identified as female (n=12; 85.7%) and approximately one-third identified as Black/African American. A range of education levels, household incomes, and marital statuses were represented.

Table 1:

Characteristics of Enrolled Caregivers (N = 14)

Characteristic
	Mean (SD)
Age (years)	42.2 (8.2)a
	n (%)b
Gender identity
Female	12 (85.7)
Male	2 (14.3)
Race
White	8 (57.1)
Black/African American	5 (35.7)
Other	1 (7.1)
Ethnicity
Non-Hispanic	13 (92.9)
Hispanic	1 (7.1)
Caregiver education
High school	5 (35.7)
Vocational school	1 (7.1)
2-year college degree	2 (14.3)
4-year college degree	3 (21.4)
Master’s degree or higher	3 (21.4)
Household income
Less than $25,000	4 (28.6)
$25,000 - $49,999	2 (14.3)
$50,000 – $74,999	2 (14.3)
$75,000 - $99,999	1 (7.1)
$100,000 - $149,999	2 (14.3)
$150,000 or more	3 (21.4)
Marital status
Married	6 (42.9)
Single	3 (21.4)
Divorced/Separated	4 (28.6)
Living with partner	1 (7.1)

^aTwo respondents chose not to report age.

^bNot all percentages sum to 100%, due to rounding.

Table 2 presents characteristics of the caregivers’ hospitalized children. Children’s mean age was 12.9 years (standard deviation = 2.4 years) and just over half were assigned female at birth. The most common reasons for admission were a chief complaint of suicidal ideation or suicide attempt, and three children were admitted for aggression. Most children (n=11; 78.6%) had other mental health diagnoses in addition to their chief complaint, and most were awaiting their first admission to an inpatient psychiatric facility. The median length of the hospital stay was 6 days (interquartile range = 4).

Table 2:

Characteristics of Enrolled Caregivers’ Hospitalized Children

Characteristic
	Mean(SD)
Age (years)	12.9 (2.4)
	Median(IQR)
Length of stay (days)	6 (4)
	n (%)a
Sex assigned at birth
Female	8 (57.1)
Male	6 (42.9)
Race
White	8 (57.1)
African American/Black	5 (35.7)
Other	1 (7.1)
Ethnicity
Non-Hispanic	13 (92.9)
Hispanic	1 (7.1)
School/Education setting
Public school	6 (42.9)
Private school	5 (35.7)
Alternative school	1 (7.1)
Virtual school	1 (7.1)
4-year college	1 (7.1)
Reason for admission
Suicide attempt	4 (28.6)
Suicidal ideation	7 (50.0)
Aggression	2 (14.3)
Autism spectrum disorder	1 (7.1)
Other mental health diagnosis presentb
Yes	11 (78.6)
No	3 (21.4)
History of prior inpatient psychiatric hospitalization
Yes	4 (28.6)
No	10 (71.4)

^aNot all percentages sum to 100%, due to rounding.

^bOther mental health diagnoses included depressive disorder, anxiety disorder, bipolar disorder, attention deficit hyperactivity disorder, oppositional defiant disorder, post-traumatic stress disorder, and other altered mental status.

Themes

Several themes emerged from the interviews, including: (1) Positive hospital and provider experiences; (2) Frustration with the medical and mental health care systems; (3) Information needs; (4) Fears about inpatient psychiatric units; (5) Practical challenges and emotional needs; (6) Difficulties with caregiver-child communication; (7) Difficulties with clinician-caregiver communication; and, (8) Need for self-care and support. Table 3 outlines each theme and associated illustrative quotes.

Table 3.

Themes and Illustrative Quotes Describing Caregivers’ Experiences while their Child Awaited Inpatient Psychiatric Treatment

Theme	Selected Quotes
Positive Hospital and Provider Experiences	“Surprisingly, having him here in the hospital’s been a lot easier than having him at home because of the fact that the nurses are helping with so much of the other stuff. It’s been a lot easier than when he’s at home… I’m not telling him no, the nurses are. So I don’t have to be the bad guy. I get to be the good guy. When I’m at home, I’m the bad guy, and that’s why he’s fighting with me.” (Caregiver 6) “Well the staff’s been very helpful. The social workers have been calling – they’ve called us multiple times to let us know what’s going on with the searching for a bed and other things. Child Life has come in three or four times saying ‘Hey, there’s stuff going on in the playroom. Do you wanna come join us?’ He’s gotten movies from them.” (Caregiver 2) “We’ve called the nurses. They’ve been there within minutes. I mean, all of my questions were answered. And then when they had to get back to me, they got back to me.” (Caregiver 10)
Frustration with medical and mental health care systems	“There’s no in-between help. It’s like she’s just sitting there until we find an inpatient [bed]. So that means she’s not getting any therapy that she needs because they don’t have – I understand they don’t have an inpatient facility, but what about having a therapist to at least get the ball rolling so when she does get transferred out, they can say hey, this is what I gather so far. Here you go. But it’s just basically hey. They come in, check her vitals, say we’re going to do this test, do that test, but no one’s talking to her to really start the process.” (Caregiver 4) “My child has [multiple diagnoses]. So, we were here twice before and tried to do a partial program, which didn’t work for him at all. So, we ended up back in the ER Tuesday. And he was evaluated and then referred for inpatient and we’ve been here waiting, since.” (Caregiver 5)
Information needs	“Yeah, I mean, there was no brochures about the programs. There was no one-pager that said, here’s a list of programs. It was, I’m in a moment standing in the hall totally freaked out, and someone rattles off four names of programs to me.” (Caregiver 5) “Do they put him in a car or a cab or an ambulance and put him in a straightjacket and drive him there? And even when he goes, if they take him, can I go with him and travel along with him, or do I have to find my own way to get there?…I just wish I knew now how that was gonna work because I think that’s kinda scary not knowing.” (Caregiver 6)
Fears about inpatient psychiatric units	“I started reading [online reviews] about it, and I read some really horrible things. And so, I’m just like, I don’t know. And I don’t want him to go in and come out worse than he is already. Because some of the stuff that I’m reading, it was just like, there were stories on there that their kids were – they went in and they’re kids were black-and-blue, bruised up, black eye, bruises on their backs, and there were bugs in their food. And I’m like, I don’t want – yeah, you think I’m gonna send my kid there. Would you send your kid there? And I’m like – and this is just like – and it was crazy because it was three different people that put the same thing as a post for their reviews.” (Caregiver 6) “[Facility name]. They’re not equipped, they’re not set up or staffed, they’re not resourced appropriately to be able to support kids with [my child’s concerns].” (Caregiver 5)
Practical challenges and emotional needs	“I’m not getting paid. And with my insurance, I have to cover – I believe the first five days, I have to kick out $150 per day…And then if she stays after five, then they cover. And then I have to cover the ER visit and I have to cover the ambulance.” (Caregiver 4) “And I have three kids at home and my mom. My mom has to have surgery, so I’m taking care of her. So I have three kids, my mom and my husband.” (Caregiver 13) “So we’re definitely a little over an hour away on a good day. So going back and forth. I think I shared before, we have the two pets at home as well, too. The pets were the harder part as well, because they can’t just obviously stay by themselves.” (Caregiver 12) “I have eight children and none of them have any type of disorder or anything besides him. So it’s kind of hard on the whole family. And – but like I said, I’m never going to give up. I’m going to find what’s going on. And it hurts so bad. Oh, it hurts me so bad, but I have to do it. I have to be strong.” (Caregiver 14)
Difficulties with caregiver-child communication	“My daughter doesn’t even remember doing what she did that night, which was a little confusing for all of us… trying to understand—do we tell her exactly what she did? She’s going to be waking up. Do we want to tell her? Do we want to not tell her? So we had a hard time trying to figure that out.” (Caregiver 12) “And yesterday she said she wanted some space, and I wasn’t hurt by it. Maybe I got to do whatever she wants to do. It just hurts me… why does she think she – that will make me better if she ends her life? To me, that doesn’t make it better. That makes it worse. Because if you love mommy and you love [your grandparents] and your [family] and your family, that’s going to hurt them.” (Caregiver 8) “I asked her why she did it, but she won’t tell me why.” (Caregiver 7)
Difficulties with clinician-caregiver communication	“The psych doctor that came in…she was very – she seemed kind of nervous to me, or I felt like it was – I didn’t feel too – like she didn’t wow me, especially…Because she didn’t talk to her, like soothing to her, like how you doing, blah, blah, blah. She just said, “Hi. I’m Dr. [name]. Do you have any – do you still have a plan?…She just came off to it.” (Caregiver 8) “I understand, [the social worker’s] job is to find a place, so they’re working behind the scenes and they don’t, necessarily, have to see me… But, on an emotional level, to meet [them], close to the beginning of the admission, face-to-face—I’m told that everything they do is over the phone with you, you don’t actually see them face-to-face. I’m like—phone is difficult for me. That’s just a quirk about me. I’m not good on the phone.” (Caregiver 3)
Need for self-care and support	“My life revolve around his life. That’s why I’m not working is because of his life. Because it – he’s my life.” (Caregiver 11) “I wanna find a support group with other moms…I wanna go over to the other parents that sees that…other parents that have to deal with that. That’s what I wanna talk to. Or see how they do it. Because I don’t have no support.” (Caregiver 11) “I didn’t do anything for myself yet. I’ve got to – not yet, because this is – I can’t worry about myself, but I do have to worry about myself.” (Caregiver 8)

1. Positive hospital and provider experiences

Caregivers expressed having an overall positive experience during their child’s hospital stay. They felt that clinicians were kind and accommodating and appreciated having staff serve as “extra eyes” on their children. This was especially true in regard to the 1:1 psychiatric technicians who are assigned to observe hospitalized behavioral health patients around the clock. As one participant noted,

“They’ve all been very helpful…And I guess it’s the psychiatry technician that sits outside his room…kinda keeping an eye on him and making sure he’s safe and all that.” (Caregiver 2)

Some caregivers felt as though their children were stable or improving while staying in the hospital. In some cases, they reported that being in the hospital improved caregiver-child relationships and eased the burden of caring for a child with mental health struggles at home.

Generally, most caregivers reported that their interactions with hospital personnel were positive. Caregivers frequently described staff as helpful and open. For example,

“Everyone’s been very nice. They have been communicating very well with me. If I have any questions, they answered them.” (Caregiver 4)

Caregivers felt that the staff they interacted with were responsive, providing them with clear and thorough information and either answering questions or following up with answers when they were not readily available. Some caregivers reported feeling supported by hospital staff while experiencing difficult emotions. They reported that staff sometimes overtly expressed empathy and other times they simply created a non-judgmental environment that helped caregivers feel more at ease:

“Everybody smiles, and that helps. That helps me as a parent do the same thing then.” (Caregiver 10)

2. Frustration with the medical and mental health care systems

While caregivers were mostly pleased with their experiences in the hospital, many expressed their frustration with the larger medical and mental healthcare systems and the process of navigating between the two systems. Caregivers discussed their difficulty obtaining appropriate mental health care for their children. One caregiver explained:

“We had gone to the local ERs a number of times in the last month and kept getting sent home because we were told he wasn’t a – he didn’t qualify, or meet the criteria, for a psychiatric admission. He’s kind of in a tough spot… right now. He’s been accepted into [specialized facility]. That was a long process. But, they don’t have a bed, and it could be – they won’t give us an idea – it’s anywhere between a month and a year, wait.” (Caregiver 3)

Some caregivers felt they knew what type of care their child needed, but stated that care was inaccessible to them due to insurance, space constraints, or concerns about differential quality of care across facilities. Sometimes caregivers’ previous experiences with their children’s inpatient psychiatric hospitalization informed their expectations and knowledge about the process of moving between the medical and mental health systems. For example,

“And, I mean, part I think of why we’re still here right now is there’s only a couple of places that I’m willing to have my child go now, because we’ve tried this. And now I’m pretty clear on what the best options are, I think.” (Caregiver 5)

3. Information needs

Caregivers also reported feeling overwhelmed by the hospital setting and expressed the need for a simplified yet comprehensive explanation of hospital practices:

“…even if they handed a piece of paper. I mean, yes, I could write it down. But, as a parent, when you’re totally stressed, you can’t think…I know, you’re probably looking at me like, ‘well, can’t you just write that down?’ Yes, I can, but under the stress – you need somebody to spoon feed you.” (Caregiver 3)

While all caregivers understood that their children would be going to an inpatient psychiatric hospital, they had many unanswered questions. Most expressed uncertainty surrounding how their child would be transported, how long their child would be hospitalized, what kinds of activities or services would be offered, the quality of the staff, and the behaviors of other patients. A recurring question among caregivers was whether or not an inpatient psychiatric stay would “work” for their children. Most caregivers expressed a desire for their children to get better, and they wanted to know if being admitted to a psychiatric unit would make a difference:

“Does it really help them?” (Caregiver 8)

4. Fears about inpatient psychiatric units

For many caregivers, unanswered questions were associated with significant concern about making the decision to send their child to an inpatient psychiatric unit. One caregiver stated,

“I didn’t send my kid to kindergarten without walking through three kindergartens first. And I’m not going to send my child to a psychiatric unit that I’ve never seen before.” (Caregiver 5)

Many caregivers reported fears about inpatient psychiatric units, having heard previous reports of negative experiences or poor outcomes related to a child’s inpatient psychiatric stay, or experiencing these themselves with a child’s previous inpatient hospitalization. Additionally, caregivers knew that they would not be permitted to stay with their children during their inpatient psychiatric hospitalization, which intensified their fears about what would happen there. One caregiver explained their fears:

“That my child would be assaulted, sexually assaulted. That my child will learn how to be – misbehave. The kids misbehave. We’re talking about kids who don’t have structure in their family, who parents leave them, who have trauma, who have been sexually assaulted by people they trust. So that was my concern. So I didn’t want them to place her anywhere, and then also the fact that my kid might encounter racism on a high level, because they wanted to send her to [facility]. Just a lot of stuff.” (Caregiver 1)

5. Practical challenges and emotional needs

Some caregivers reflected on the practical difficulties they experienced during the hospitalization, including missing work, stress related to out-of-pocket costs associated with the hospitalization, not being able to take care of their other children, and generally missing the comforts of home and routine. One participant shared,

“I’m not at work. I mean, my other child, it’s hard on him…I’m exhausted.” (Caregiver 5)

Most caregivers reported that they were under a great deal of stress from caring for a child with mental health concerns even before the hospitalization, and that the current crisis and hospitalization exacerbated that strain. In particular, caregivers expressed feelings of ambivalence and sadness about seeing their children hospitalized.

6. Difficulties with caregiver-child communication

Some caregivers were concerned about how to discuss the impending psychiatric hospitalization with their child. While caregivers felt generally positive about the communication between clinicians and their children, they reported that it was still a challenge for them to communicate about the plan directly with their child. One caregiver said,

“He asked me to go home, and I say, ‘We can’t, we have to stay here.’ And then, he says, ‘I don’t wanna live here forever.’ And, I said, ‘We’re not gonna live here forever.’ I don’t really know what to say, beyond that.” (Caregiver 3)

Talking about mental health or the crisis that was the impetus for hospitalization was also difficult for some families.

7. Difficulties with clinician-caregiver communication

Although rare, a few participants mentioned difficulties successfully communicating with their child’s care team. Some caregivers felt that they were not listened to or consulted as part of the team and reported feeling that their perspective as a parent was not respected. As one participant stated,

“I just think sometimes they don’t take everything into consideration.” (Caregiver 1)

These concerns were intensified by procedural issues, such as the fact that social workers were often in contact with caregivers by phone, rather than meeting with them in person.

8. Need for self-care and support

Some caregivers also reported lack of self-care and social support. Generally speaking, caregivers stated that self-care was not a priority for them while their children were hospitalized. When asked about self-care practices, one caregiver said,

“What do you mean by self-care? Nothing consistent.” (Caregiver 10)

Only a few caregivers were aware of hospital amenities intended to ease caregiver burden during their child’s stay, such as showers, laundry facilities, coffee, and parking vouchers. Caregivers who knew about the services expressed appreciation for them and for the staff who had made them aware of the services

In addition, some caregivers reported an absence of social support outside the hospital:

“I don’t really have anybody. I’m not gonna lie to you.” (Caregiver 1)

Some caregivers expressed that they often felt alone in their experience, and some wanted to find a community that understood what they were going through. One caregiver specifically mentioned the difficulty in finding a support system for mental health concerns:

“…if our child had cancer, it’s a much easier conversation to have with people and you would post on Facebook and you would blah, blah, blah, blah, blah, and you’d get much different levels of support and understanding, than if you say my child has something with mental illness.” (Caregiver 12)

Discussion

In this qualitative study, caregivers of children “boarding” in a medical hospital while awaiting transfer to an inpatient psychiatric unit identified aspects of their hospital experience that were supportive as well as aspects that contributed to stress and emotional distress. Overall, the socioeconomically and demographically diverse group of caregivers we interviewed reported having a positive view of the hospital and staff and good communication with providers. Nevertheless, many caregivers had unanswered questions about what was next for their children, frustrations with the medical and mental health care systems, specific fears about inpatient psychiatric care, and difficulty knowing how to talk to their child about what had happened and what would happen next. A few felt unable to adequately communicate with care teams. Caregivers also described that they had their own emotional needs and practical challenges, such as caring for their other children, and that they were lacking support and care for themselves. Overall, their responses exhibited several parallels with findings from a study of adolescents’ boarding experiences, particularly in regard to the value of kindness and empathy in hospital providers and the stress resulting from unmet information needs (Worsley et al., 2019).

Many findings from the present study—including caregivers’ feelings of distress, strain, and disruptions of daily life—align with previous studies of caregivers of individuals experiencing a mental health crisis (Weller et al., 2015) as well as prior research on the impact of a medical crisis (Dahav and Sjöström-Strand, 2018). For example, our findings regarding caregivers’ desire for information, feelings of being overwhelmed, appreciation of clinicians’ empathy and efforts to tend to caregiver comfort, and uncertainty and fear regarding the upcoming transfer were consistent with a Swedish study of parent experiences during their child’s stay in a pediatric intensive care unit (Dahav and Sjöström-Strand, 2018), and our participants’ discussion of the difficulty of knowing how to explain information to their children was consistent with a study in the United Kingdom of parents whose children were awaiting a variety of medical procedures (Bray et al., 2019). This suggests common threads in caregiver experiences across crisis situations, even when cultures and health care systems vary.

Similarly, caregivers across these situations have cited many of the same provider behaviors as helpful to them. This highlights that many of the strategies pediatric clinical teams have developed to support the families of children hospitalized with general medical problems may be helpful for families experiencing a mental health crisis, and is in keeping with prior literature affirming the pediatric clinical team’s role in providing supportive care for caregivers (Hagvall et al., 2016, Neff et al., 2003). At the same time, general medical providers without specialty mental health training may be less prepared to address detailed questions and caregiver fears regarding inpatient psychiatric care and navigating the mental health system.

Our findings offer insights that can inform the design of clinician education and care models to serve families experiencing a child’s mental health emergency, as well as quality improvement initiatives to improve the experience and outcomes of those awaiting psychiatric treatment. Given the current workforce limitations in US children’s hospitals, with inadequate mental health specialist staffing, we focus on strategies that draw on existing skills of the generalist workforce to enhance care of patients experiencing a mental health crisis.

First, caregivers of children experiencing mental health crises are often overwhelmed and are likely to benefit from supportive efforts to reduce their stress as they participate in their child’s care. From a logistical standpoint, facilities could consider creating a “welcome sheet” for newly admitted families awaiting psychiatric disposition that explains key information about the current hospital environment as well as the process of initiating psychiatric treatment. Consistently providing verbal reminders to caregivers of how the unit and hospital operate, including identifying staff roles, can also reduce caregivers’ experience of being confused during their child’s hospital stay. From an emotional standpoint, caregivers in our study valued clinicians of all disciplines who displayed a positive demeanor and expressed a willingness to help, including nurses, doctors, social workers, and psychiatric technicians; they cited the importance of both personal connections and information. Clinicians working with this patient population can try to ease caregiver stress in a proactive way by offering an empathic and non-judgmental attitude, expressing a willingness to answer questions, and ensuring caregivers are kept up to date. Furthermore, clinicians on a child’s care team (of any discipline) could make an effort to have in-person conversations with caregivers and ensure that caregivers feel represented and heard when discussing their child’s disposition.

Second, continued encouragement and suggestions for self-care may be beneficial, as most caregivers in our study reported having few or no self-care strategies. This is likely to be useful both within and beyond the hospital setting, particularly in cases where the mental health crisis is related to a chronic condition or chronic stressors. Within the hospital, having a system in place to make sure caregivers are made aware of hospital amenities, such as food and beverages available at the nurses’ station, can contribute to caregiver comfort and well-being. In addition, our findings suggested that discussions of how to engage a support system would be helpful to many caregivers; many reported substantial stress related to juggling multiple responsibilities and reported they “had no one.” These discussions are likely to be particularly important given the sense of stigma that can accompany a mental health crisis and hospitalization. Interestingly, most caregivers in our study did not overtly discuss feeling stigmatized, but it is possible that their lack of social support may have been related to a reluctance to discuss their child’s crisis. Recent years have seen efforts to destigmatize mental health concerns, but prior studies have documented caregiver feelings of stigma related to mental health hospitalizations and suicide attempts, including reluctance to disclose diagnoses or hospitalizations to others (Clarke, 2012; Larson and Corrigan, 2008; Sheehan et al., 2017; Weller et al., 2015). Clinical teams could consider helping caregivers to identify and reach out to trusted members of their social networks, to support their own resilience and capacity to care for their child and their other responsibilities during the hospitalization. This may be especially important for families facing a mental health crisis for the first time. Connecting parents to relevant support groups and support organizations may also be helpful.

Third, inquiring about and addressing caregivers’ information needs and sources of fear or uncertainty is important, as we found that unanswered questions and frustrations were common. This was especially true when it came to local options for inpatient psychiatric care and the logistics of being transferred. Focusing on information needs and explaining care processes is likely to be especially important for families experiencing their first transfer to inpatient care, whereas those who have had prior experiences may have specific concerns based on those experiences.

If mental health specialists with more intimate knowledge of care options and procedures are not available, written materials that describe local facilities and address common questions regarding clinical care, insurance restrictions, and other procedures could be helpful as an adjunct to the information provided by general medical teams. Offering this information in an easy-to-understand format is crucial in light of caregivers’ anxiety and strain; several study participants mentioned wanting to be “spoon-fed” information, and another noted that brochures would be helpful.

Finally, in keeping with prior findings that the health literacy of children is influenced by parents’ understanding and ability to communicate about medical care (Bray et al., 2019), addressing parent questions and concerns may have the added benefit of helping caregivers relay information to their children, which they were sometimes uncomfortable doing. Our study findings indicate that guidance on how to discuss mental health with their children may be beneficial for caregivers, particularly if they are facing a first psychiatric hospitalization, as were the majority of our participants. The boarding period offers an opportunity for psychoeducation of both young patients and their caregivers, which could include written materials available from professional associations or advocacy organizations when mental health specialists are not available.

Limitations

As with all qualitative studies, our findings describe the experiences of a specific group of participants and may differ from caregiver experiences in other settings. Our study was conducted at a freestanding children’s hospital, and caregiver experiences may differ at hospitals and EDs without a pediatric focus of care. Because enrollment was limited to English-speaking caregivers who were legal guardians of children who were hospitalized for a mental health crisis, our results may not represent the experiences of other caregivers, including individuals with limited English proficiency and foster parents. Finally, medical teams declined participation on behalf of some families due to family stress or strained relationships with the medical care team, and experiences of those families are not captured here.

Implications for practice

With pediatricians reporting they do not have adequate mental healthcare skills to address their patients’ concerns (Fox et al., 2010), identifying areas where principles of general medical care translate well to mental healthcare can offer an interim approach as health systems work to improve the mental health workforce capacity. Future research could investigate whether enhancing clinicians’ awareness and self-efficacy in using these skills could be helpful. In addition, a significant amount of caregiver uncertainty and frustration were due to systems-level issues and barriers, including insurance restrictions and limited availability of inpatient psychiatric facilities that caregivers perceived to be acceptable. These broader issues also deserve attention.

Conclusion

In light of shortages in psychiatric treatment availability in the United States, there is a continued need for medical units to provide high quality care to young people experiencing mental health crises. Caregiver experiences illuminate aspects of this hospital-based care that are helpful as well as several targets for improvement, and can guide clinicians treating patients and families while they await transfer for inpatient psychiatric treatment.